-
6 people are interested
Data Governance Specialist
ORGANIZATION: Rare Genomics Institute
Please visit the new page to apply.
-
6 people are interested
Do good for your community while using your professional expertise. Work with talented peers on a rewarding non-profit cause related program. Rare Genomics Institute is making a difference. Rare Genomics Institute is a non-profit organization that helps families in need of genome research.
The IT Department is responsible for supporting and maintaining the IT systems, infrastructure and for providing technical support to users across the institute.
The post holder will provide effective data governance assistance across all aspects of the business.
Responsibilities:
The position will involve the following areas of responsibility:
Establish of a data governance framework, policies, and standards to comply with privacy, confidentiality, and information
Devise, develop, and maintain documentation related to Data Governance and data sharing processes and partnerships
Work with teams across the institute to ensure data is collected, accurate, stored, released, and reported in a manner consistent with the mission and needs of the organization
Act as point of collaboration between business and IT to ensure data quality and integrity
Qualifications :
Knowledge of data governance models and data management practices
Experience of designing and building a Data Governance strategy from the ground up
1 More opportunity with Rare Genomics Institute
6 ReviewsOpportunities
About Rare Genomics Institute
Location:
8504 Firestone Blvd., #198, Downey, CA 90241, US
Mission Statement
At RG, we are more than just an organization. We are a community dedicated to helping rare disease patients find hope for a cure. We work alongside patients and their families, providing them with the necessary tools, knowledge, and connections so that they can better understand the cause of their disease. We believe that every patient deserves more out of life.
Description
Rare Genomics Institute (RGI) is a nonprofit organization dedicated to helping rare disease
patients find a diagnosis, treatment, and pathway to a cure. Through personalized research
projects, RGI provides access to world leading medical institutions and scientists to conduct
genomic sequencing, coordinates with clinicians and counselors to interpret findings, and offers an
online crowd-funding platform to deliver financial solutions. RGI also supports rare disease
advocacy by fostering an online community of rare disease patients and supporting rare disease
research through a yearly grant competition.
Since being founded in 2011, RGI has completed over 300 genetic sequencing and analysis
projects, assisted patients fund over $3.5 million worth of genomic sequencing, discovered 8
unique genetic mutations in-house, given over $2 million dollars in grants to researchers on rare
disease, and developed an online community with over 10,000 rare disease members.
Through volunteers, RGI is able to slowly push science and health care forward to meet the needs
of patients affected by rare diseases. To learn more about RGI check out our website, like us on
Facebook, and follow us on Twitter!
CAUSE AREAS
WHEN
WHERE
350 Fifth AvenueNew York, NY 10118
DATE POSTED
January 20, 2017
SKILLS
GOOD FOR
N/A
REQUIREMENTS
N/A